Lauren’s Story

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11Lauren's World: My life with cerebral palsy

Lauren’s World:

My Life with Cerebral Palsy

After 3 years of fertility drugs, Mearl and Tina gave up on trying to get pregnant. They thought all hope was lost when suddenly, Tina was pregnant. It was a miracle! Nine months later, Tina went into labor at home and Mearl drove her to the hospital.  Tina had a traumatic birthing experience.  The baby’s heartbeat was lost a couple of times.  The attending physician kept putting off a C-section.  When the heartbeat flat-lined, the physician decided it was time for a crash C-section.

Another physician, who saw Tina during her pregnancy, grabbed the scalpel before Tina was fully anesthetized and started the procedure.  The baby was delivered and was not breathing.  The doctors successfully resuscitated her after 9 minutes.  She was then placed in the Neonatal Intensive Care Unit (NICU).  Mearl and Tina were told that they had a newborn girl.

Tina was transferred to a regular room and that is where medical staff informed her that her newborn baby had brain damage. Their daughter, whom they named Lauren, has cerebral palsy. Cerebral palsy due to brain damage during birth is called congenital cerebral palsy.

Mearl and Tina’s initial reaction was anger and confusion. Raising a baby is hard enough, but a baby with needs is another world. If they had known that the doctor’s decision to delay the C-section would lead to something so life-changing, they would have insisted on having the C-section after the first time they lost the baby’s heartbeat.

Mearl & Tina Parenting

Mearl and Tina didn’t raise Lauren much differently than any other parent would. They taught her colors, numbers, letters, and shapes. They read books to Lauren and would use their fingers for her to follow along. Lauren’s grandfather used his woodworking skills to build her a toy bin for sorting, which included a bin of water for splashing around. Lauren enjoyed her new toy and her parents realized she knew what she was doing.

Lauren had a teacher nicknamed “Miss B”, who included individuals with varying degrees of functionality in the same lesson. Those that wanted or needed more assistance were given one on one attention in class. Miss B even got the entire class involved in challenger baseball.

Lauren becomes ‘Biker chick’

As Lauren grew older, she developed a variety of interests. A lady in their area got into a car accident and ended up in a wheelchair. The lady had similar physical disabilities to Lauren. Her boyfriend decided to give up riding his motorcycle because she could not ride with him. But she wanted him to find a way for her to ride with him. The lady’s boyfriend worked on figuring out a solution.  The boyfriend was able to make a bike for his girlfriend to ride on.

Mearl and Tina saw the lady’s motorcycle and decided to get one for Lauren. They contacted someone in Washington for help. When the bike arrived, it didn’t look like it does on the cover of her book Lauren’s World: My Life with Cerebral Palsy. The bike had to be modified for Lauren and now it’s one of her toys.

Lauren discovered Textfree Web which is an app that allows her to text people without having a phone. She has been using it to text her friends, including country music artists. Lauren has been helping Ken Morton, Jr of Haggin Oaks organize the fundraising event “Golf and Guitars” to convince some country music artists to show up for their upcoming event in May 2019. Lauren has already secured David Britt and is trying to get ahold of Dierks Bentley. With the help of her computer, Lauren is now a fundraiser and a book writer. By living her life to the fullest, Lauren is proving that keeping people with disabilities connected to the community is beneficial to everyone.

Lauren likes to communicate with her computer, but Mearl and Tina encourage her to speak because she can’t always take the device with her. If you’re not around Lauren often, it will take a bit of time to understand her.

Lauren’s heroes are Jimmy Wayne and Ken Morton Jr. “Jimmy was doing a walk half-way across the U.S. from Tennessee to Arizona to raise awareness for foster kids. For Lauren’s 20th birthday, we flew her to Oklahoma and walked with Jimmy in Oklahoma,” said Mearl. Jimmy and Lauren are also featured in each other’s books. Their interactions have been inspirational for both of them.

Mearl & Tina’s Advice

Mearl and Tina’s advice to parents of children with disabilities is “If you’ve got a good supportive family, get them involved early on. It’s not a disease, it’s a condition. It’s not contagious. It’s not going to hurt anybody. No reason to be afraid of them. They are going to move differently. It’s just their way of getting around. They are going to make noises differently. It’s just their way of communicating.”

Getting family involved gives parents a chance to step away and decompress. Lauren’s cousins come over regularly and talk to her like they would to anyone else. Lauren and her cousins like to play video games, cards, and go bowling together.

“We don’t want to create more issues. That’s something parents need to watch out for. Therapy is a good thing but make sure it’s not doing any more harm than good. Watch what their body is doing” advised Mearl.

“You, as a parent, know your child.  The therapists and doctors spend a small amount of time with your child compared to what we as parents spend.  It’s advice and recommendations.  It’s not always something you have to do. Speak up if you don’t agree with what the therapists wants.  With communication, it’s best to see what works for your child and not based on a group of children with similar disabilities.  What works for one child doesn’t always work for your child and therapists need to remember this.  It’s a lot of trial and error.  When getting a customized wheelchair, making sure the child is comfortable and well positioned is key.  An uncomfortable child is an unhappy child and, in some cases, a child who is in pain.  You need to pay attention to your child,” said Tina.

Lauren’s advice to the world

Given the traumatic birthing experience, it is a miracle that Lauren is a high functioning individual.

She wanted to go to school, so her parents got her into preschool, kindergarten, and so forth. Lauren took the high school exit exam and passed on the first attempt. She got her high school diploma.

Lauren’s message to people is “Don’t be afraid of people with disabilities. We’re just people like you.” And to parents she says “Please pay attention to your child more often”.

Some people aren’t afraid to approach Lauren and want her to feel included as part of the world. With a bit of patience, you can have a full conversation with Lauren.

Lauren told UCP that she appreciates when people speak directly to her, and don’t ask their questions for her to her parents.

Lauren wrote her book Lauren’s World: My Life with Cerebral Palsy so she could share her message with the world not to fear people with disabilities.

Lauren’s book was a 3 year project. Whenever they were doing something she wanted to share, Lauren would say, “Papa, take notes.” Mearl would write everything down and print it out for Lauren to review. Lauren worked with Tina to organize her notes and two friends helped edit the book. For a short period of time, on the day of the book release, Lauren’s World: My Life with Cerebral Palsy was the number 1 new release in the special needs category.

If you would like to purchase Lauren’s World: My Life with Cerebral Palsy, you can find it on Amazon.